Do you have problems focusing your eyes? What do we think it means in terms of ME/CFS?

Sasha

Sasha

Senior Member (Voting Rights)
On another thread, several people mentioned difficulty focusing and @Skycloud suggested setting up a thread on it, so here it is.

I seem to remember reading lots of accounts of this maybe thirty or so years ago in the MEA/AfME magazines.

Can we please stick here to a discussion only of focusing difficulties and not other eye problems, to help us... focus? (Didn't realise that was going there.) Thanks!

Amw66 said:
My daughter's vision has become pretty atrocious . This has been a steady decline over 4 years as she has become more ill.
She can't focus properly- it's as if the muscles don't work . In PEM it's simply blurry shapes...
Click to expand...

Skycloud said:
Off topic for the thread but I also have vision issues that come on with overdoing it and during PEM. To me it seems to be a focusssing issue. It could be useful if someone were to start a thread on vision as there seem to be a few of us.
Click to expand...
Focusing issues, anybody else? If a few have it, and it's ME/CFS related, why don't loads of us have it? Or might it be not a real association?

Wondering if this happens in other conditions.
 
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Good luck trying to get people to just comment on one aspect of eye problems ;)

Yes I would say I do have some problems with focusing my eyes during PEM that aren’t an issue otherwise. I recently had my 2 year check and nothing came up - I wasn’t in PEM tho. Also in my 60s so the age factor comes into my vision too obviously.
 
I have terrible eyesight, but I haven't noticed any specific problem with focusing. Since cataract surgery, my ability to accommodate for distance is worse, but that's because I went for the free option, made of relatively inflexible plastic. The expensive option (several $k) claimed more flexibility, but I'm guessing that doesn't match youthful natural lenses.

While some people's focusing problems might be ME-related, if it's not affecting the majority of PWME, it's likely a downstream effect that involves a number of individual factors. Two people might have similar ME-related problems with completely different mechanisms.
 
I have intermittent issues focus, that are more frequent when my underlying condition is worse or I am in PEM.

I have varifocal glasses, but have given up on using them for reading or using my tablet a lot of the time, I find just holding my tablet closer to my eyes without glasses is makes easier for to focus.

Sometimes when worse with my ME I find it takes a while to be able to focus my eyes on waking up.
 
I have intermittent loss of focus.
I saw a home visit optician who asked me if I have MS or something. Apparently the 6 muscles around your eye are supposed to work together to support it and he could tell they weren’t. Said he sees it quite a lot, and that’s a cause of focus/vision issues.
 
One reason this is so interesting to me is that I thought there were certain muscles in the body were biologically different from others in their resistant to fatigue, such as the heart muscles, and I thought that maybe the eyes were one such set - and I wonder what this tells us about ME/CFS, if this focussing issue is an ME/CFS thing, which is unclear.
 
I find that I have two primary issues with my vision, both are worse with PEM.

The first, and more general issue is fatigability - my vision gets worse over the course of the day and with more intense usage. If I take a vision test in the late afternoon I end up with an Rx that is significantly stronger than if I take the same test in the morning. This fluctuates considerably.

The second seems to be a neurological issue, possibly also related to fatigue: my brain some times struggles to synchronize my binocular vision. This manifests in various ways, many of them with a tendency to cause headache, nausea and fatigue, but I notice most frequently if I stare blankly at a wall or into a corner or something like. When I do this, there is a slight "shimmer," almost like heat-distortion, as my brain seems to rapidly be shifting between my left and right eye. This is scarcely perceptible when I am having one of my better days, but quite distracting and unpleasant when I am particularly tired or in PEM.

There are a host of other issues I experience that seem more clearly tied to visual processing, but that gets even further away from what I think is being discussed here.
 
I'm a little cross-eyed, early into ME/CFS I got glasses with a prism, that helped a lot.
When young I was good at all ball sports, which isn't normal for someone being cross-eyed.
Did ME/CFS make it worse, I think so. It's very difficult to find a good optometrist. Their training was cut short by a year, so only the old ones know how to examine this problem.
Mine needed to get it wrong first, glasses all wrong. After the third exam, when he knew what to look for the glasses were fine.
 
Possibly of interest
Dolphin

Thread 'Fatigue and eye problems webinar with Optometrist Diana Monea (CDN$20)'

[I am not a fan of Ellie Stein’s focus on and promotion of brain training but this doesn’t seem to involve that]



[td]
​
Join Optometrist Diana Monea and me for
The Complete Eye Exam for Chronic Conditions
Monday, November 9, 2026, at 5:00pm Alberta Time (UTC-6)

What if part of your fatigue is coming from your eyes?
Do you have unanswered questions about your eye health?​

When you...​
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I have retinal migraine. It isn't painful, it's just that one eye can't focus at all. It lasts about 20 to 30 minutes and is only ever in one eye. It's more of an annoyance than anything, I'd had it decades before I discovered it even had a name. No way of knowing whether it's connected to ME/CFS.

When I'm in PEM, shifts between close focus and middle distance are noticeably slower than usual. The most difficult thing is photography, when I've been peering into a close eyepiece for a long time and then try to shift to long distance focus.

I'm not sure there's anything very abnormal about it, though, maybe some older people probably do have a bit of lag when they're fatigued? It seems fairly well established that their eyes can take several times as long as a younger person's to adjust to things like glare from oncoming car headlights at night.
 
Definitely have focus issues. More so as I get older. This is on top of normal age related presbyopia, and a touch of astigmatism mainly in the left eye.

It is variable and transient, and closely related to the degree of general symptom levels, particularly fatigue and PEM. Often asymmetric, with one eye being much worse than the other.

Which can be a problem with getting a consistent accurate prescription from the optician (not their fault). More than once I have had to defer my regular eye exam for a bit until it has settled down.
 
To expand a little on my previous comment, my blurry vision (which happens during PEM) is such that my reading glasses aren’t sufficient for reading small text. I can’t read the small text on the back of a sardine tin at all, for example and I need to zoom in a little for reading screens.

I first this noticed the focussing (I assume it is) issue when I was still in my mid 40’s (edit to add: early into ME/CFS) and then had otherwise perfect vision, so I don’t think it’s age related in my case.

Having dry eyes can blur vision as can eye strain. I do use drops for dry eyes routinely, and have never found them to make a difference in this situation.

I’ve just thought of it as an oddity of PEM and very minor amongst it all, but I do find it interesting that there are others reporting similar. I would guess it’s not that important but thank you @Sasha for starting the thread.
 
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